The ranting of a mother and advocate for Type one diabetes. The founder of www.diabetesadvocacy.com welcomes you to journey through life with a son with Type 1

Tuesday, July 15, 2014

Support in the Strangest of Places

I am an avid reader. I have loved to read since I was a child. If I
could find a way to read for a living, I would be a very happy and
ideally very rich person. I read everything. I read action books,
mysteries, spiritual books, diabetes books, and most recently a book
about a mother of a girl who has anorexia.I am not exactly sure
what made me decide to open this book and read it. Perhaps it is my own
struggle with my body image. Perhaps it was the fact that is was a
mother telling a story of her struggle with her child's potentially
lethal disease. Whatever it was, this book quickly showed me that being
a parent of a child with a disease--any disease, sadly puts you in a
club with more similarities than differences.Brave Girl Eating by Harriet Brown, first hit home when she wrote "you're not to blame, you're not alone, and you can make a difference in your child's life".
What a powerful statement! It needs to be a poster in our diabetes
clinics. It is a statement that each and every parent of a child with
diabetes needs to fully understand and embrace. As I have said before,
we carry our own guilt
and are further burdened by the misconceptions of others. We need to
know that we are doing our very best and that is all that any one can
ask.For some reason, Ms. Brown seemed to make more than one
comparison of life with anorexia and life with diabetes. I am not sure
if she knew someone living with diabetes or in her research she found
some similarities but she does make reference to living with the disease
on more than one occasion. She also makes many statements that could
easily apply to living with a child with diabetes.She talks about
feeling overwhelmed by her daughter's illness and then feeling guilty
about it. "I can take a walk, read a book, shut out the anorexia for a
little while. But its insider her. She can't get away, not for a
second." How many parents of children with diabetes have felt that
exact same way? How often have we felt guilty because we could sleep
through the night when our child went away to camp or when we went on
vacation and left them with a responsible parent or loved one? It hurts
us to know that we can leave it behind but our children can't.She
talks about things like her daughter lying to her about food and again
the issue crosses over easily into life with diabetes. In our case, our
children tend to reach an age where they lie about food intake, insulin
dosing, or bg level readings. The violation of our trust is
devastating either way and in both cases the lie is brought about by
frustrations with a disease. It isn't any better no matter where it
comes from. The pain and sadness as a parent is equally overwhelming.Ms.
Brown talks about wondering if her daughter's behavior is because of
anorexia or simply because she is a teen? When my son was small and
would fall asleep during the day, I would panic and test him. Was he
sleeping because he was a toddler who was tired or was he low and had
passed out? If he threw a tantrum, was he being a child full of spite
and temper or was his rage fueled by high blood glucose and therefore he
may not completely responsible for his actions? How did I decide? How
did I find a balance with punishment? Like the author, I struggled.In Brave Girl Eating, the author also talks about stigma. In this case the stigma of a mental illness. In diabetes, we know that there are many stigmas
and fighting the public's misconceptions can often be almost as
difficult as battling bg levels. To make things even worse, there are
an increased number of people living with diabetes who also are dealing
with eating disorders (is it any wonder when their lives revolve around
food 24/7) as well as depression. They must understand this book in
more ways than I can begin to imagine. How painful.Ms. Brown
also speaks to the idea that anorexia has taught her to live in the
moment. Ironically diabetes has had a similar effect on my own life.
Learning to live life four hours
at a time was the only way for me to cope. Nothing else mattered.
Tomorrow was too far away but his NovoRapid would kick in within four
hours and it could fix that high, maintain his perfect reading or be
just enough to send him low and create more havoc for me. Four
hours--just get through four hours and then go forward.As I
mentioned, ironically she notes the similarity to diabetes more than
once. In learning to live with the new normal of life with anorexia, she
wrote, "I told her if she had diabetes, she'd have to test her blood
sugar every day; at first it would be a pain, but she'd get used to it.
It would become just one of those things she had to do, like brushing
her teeth. It would become part of "normal" for her." We know that
diabetes is a bit more than testing daily. We know that you never
really get used to lancing your finger each day, but it is something
that has to be done...like brushing your teeth. It is something that
you somehow have to come to accept in order to move forward with your
life.Its funny where you find inspiration and camaraderie. I
started this book because I was in part looking for insight into my own
body image issues. I finished this book realizing that parents of
children fighting illnesses may have many more similarities than we
thought possible. When we open our minds and our hearts, we find
support in the strangest of places.

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Disclaimer...in case you didn't already know...

None of the writing, opinions, or information contained in this blog should be taken as any kind of suggestion for your own diabetes care. I am not a doctor, dietician or trained diabetes educator (although I play one in real life) and have no formal medical training. If you have questions or concerns about individual health matters or the management of your diabetes, please consult your doctor, specialist nurse or diabetes care team.